How does everyone cope with having CF? Do you tell people you have it? I am relatively healthy young woman and I almost never tell new people. For example I have worked at the same place for 5 years and no one knows. A few people think I have asthma or a really bad cold or that I smoke too much. I don't know why I can't just admit it. Mostly because I don't want people to feel sorry for me or assume that it somehow makes me different. Does anyone else battle with this (or maybe everyone does)?
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coping with CF and the truth
- Thread starter anonymous
- Start date
Emily65Roses
New member
I won't speak for anyone but myself, but I know not *everyone* deals with this, because I don't. Everyone I've ever known has known about the CF. I don't bother hiding any of it. I just don't care enough. I definitely see why people would, but it's too much trouble for me when I could just get it out in the open instead. But you are not the only one, I know other people right on this forum that deal with this.
I don't tell very many people either. I don't want their sympathy and I don't want them to feel uncomfortable around me or to treat me differently. Sometimes, I just don't have the time to explain it all either if someone asks if I have a cold, smoke, etc.
When I was school aged, I was somewhat in denial so I told almost no one. That is such a tough time because you don't want to be 'different'.
I have told my close friends now, and it is nice to feel that you're not hiding anything, and it is nice to be out in the open and to be able to talk about it with friends.
When I was school aged, I was somewhat in denial so I told almost no one. That is such a tough time because you don't want to be 'different'.
I have told my close friends now, and it is nice to feel that you're not hiding anything, and it is nice to be out in the open and to be able to talk about it with friends.
BaylorCrew07
New member
I tell some people; I don't hide it or anything. I told my close friends as soon as I found out (I was diagnosed about 6 months ago), and they have been so supportive and helpful. Other people have heard or I have told, and it doesn't bother me that they know or anything. When people ask I actually enjoy telling them about it because a lot of people have never heard of it before, and I really wish more people knew about it. I did some fundraisers w/ the swim team I coached, which really freaked me out because I didn't all of the children and parents to know, but it actually turned out to be not as scary as I pictured it, and I raised a lot of money, so yeah. I guess I'm just saying I'm selective about who I tell - if I don't need to tell them, I don't bother, but sometimes I do like to talk about it with my close friends. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Also, at first I didn't want anyone to know because I didn't want them to feel sorry for me, like you said. However, I find that either 1. They are still supportive and the same kind of great friend they always have been, or 2. They still don't get it, no matter how much I say, and think it's not a big deal because "i look okay, so it can't be that bad" ...but that's a whole different tangent that I won't go off on...hehe
~ Debra
Also, at first I didn't want anyone to know because I didn't want them to feel sorry for me, like you said. However, I find that either 1. They are still supportive and the same kind of great friend they always have been, or 2. They still don't get it, no matter how much I say, and think it's not a big deal because "i look okay, so it can't be that bad" ...but that's a whole different tangent that I won't go off on...hehe
~ Debra
Personally, once I meet a person and get to know them and they get to know me in return, I tell them about what I have. I really have no qualms about it because, according to most of the people that I know, I'm a very outgoing and strong person, so when I tell people about my illness, they seem almost shocked because I don't look or act sick. Usually after that they never bring it up and we go on as usual. In high school, I was actually pretty well-known because of the kind of person I was, and also because of my CF. Anyone who knew about it and saw me go off on a coughing spree usually made a joke about it, saying that I shouldn't smoke so much. I didn't mind and actually kind of laughed about it. But if people want to feel sorry for me, that's fine. That's their business. I don't need their sympathy, nor do I really want it, but I've never had anyone really treat me any differently because of it. I don't go blurting it out the first time I meet someone, but once they know me for who I am as a person, I don't feel akward at all about telling them that I have CF.
Im glad someone postwed this as I go through this dilemma quite alot. Im 27 have been diagnsoed since birth or a few motnhs after. I still havent had a hospital admission and I keep pretty well. I was diagnosed in 2002 with CFRD but that is well controlled and just another part of my daily routine.
I am really spoty and lift weights etc I also have worked at gyms and work in sports and recreation as part of my job. So when people look at me they kind of see a jock sporty type of guy. So I have only ever told one person my current girlfriend and she has been soooo good about it all. However I have heard dsories where people have very little education about it and what cf is. I am a bit of a pessimist and hide it still mostly cos I can and I do dread the day someone discovers my secret life. I think there is no right or wrong answer to this post I am only now realising I have cf and looking up things and acknowledging that I have it but I am still a bit ehsitasnt in telling people. I actuallu am going to start wearinga cf awareness bracelet I got shipped over Im in Australia by the way.
So thats my two cents hope that helps bu theres no right or wring its an indivdiual decision I think.
I am really spoty and lift weights etc I also have worked at gyms and work in sports and recreation as part of my job. So when people look at me they kind of see a jock sporty type of guy. So I have only ever told one person my current girlfriend and she has been soooo good about it all. However I have heard dsories where people have very little education about it and what cf is. I am a bit of a pessimist and hide it still mostly cos I can and I do dread the day someone discovers my secret life. I think there is no right or wrong answer to this post I am only now realising I have cf and looking up things and acknowledging that I have it but I am still a bit ehsitasnt in telling people. I actuallu am going to start wearinga cf awareness bracelet I got shipped over Im in Australia by the way.
So thats my two cents hope that helps bu theres no right or wring its an indivdiual decision I think.
When I was healthy I wouldn't share my CF with anyone that wasn't significant. I would do my best to keep it to my self. However, now that I am much worse, I am like a bull in a china shop. I feel now if they can't handle or appreciate the fact that I have CF, they had better get out of my way. Don't get me wrong, I don't announce it to anyone, but if someone feels that they have to intrusively ask me if I am alright, or tell me I should be home with my cold and not spreading germs about, I sure give them the business.
Grendel
33/m
Grendel
33/m
Emily65Roses
New member
"Don't get me wrong, I don't announce it to anyone, but if someone feels that they have to ask if I am alright, or tell me I should be home with my cold and not spreading germs about, I sure give them the business."
DAMN RIGHT!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
DAMN RIGHT!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
serendipity730
New member
I tell "new people" if I think I will be developing any sort of relationship with them. Believe me, it isn't easy sometimes, but I think it is the best way to go. I feel that if I don't tell people, I am the one who loses in the end. Hiding it is too much work. I've had some weird reactions to it, but people don't usually pity me. I used to really worry about people thinking I was different, but not so much anymore. Mostly, I think it is important to tell people I have CF when I get to know them, because I wouldn't want someone that I knew at least somewhat well to keep that from me.
I personally tell everyone that will be affected adversly when/if they hear me cough. I don't want anyone thinking I have a contagious disease. In doing so, I have been given more support than I could imagine. It does get annoying when some people get too feeling sorry. But I feel that properly educated, people will understand and be supportive.
-steve
-steve
cfgirl2008
New member
Last year at school I had the Emily 65 Roses book and I gave it to my health teacher and she read it to the class.I do tell people about my CF. I agree with the little education of CF at school. In the science books all I see is one paragraph of CF.I get so mad at that. My younger brother also has CF but worser than me.
Tiffany 15 w/cf
Tiffany 15 w/cf
I don't tell many people involved in my daily routines about my CF. Employers, co-workers, casual friends, etc, have no clue. It's not their business. This is a weird topic for me. When I was younger (high school aged and younger), I was very open about it simply because I had to be. I was hospitalized frequently and missed a lot of school. When I was in school I was often wearing O2. I spoke up about CF because it was either that or have the whole school buzzing rumors about it.
As an adult I'm much more tight-lipped. My co-workers, employers and casual friends have no clue. Most of my boyfriend's friends don't know and his family has no clue. I cherish my privacy and think that unless a person is going to be an important part of my support structure, it's not something I want them to know. As much as CF is a huge part of my life, and it defines what I do on a daily basis, and in part has definitely made me who I am, I don't think it defines who I am... and that's why I don't think it's important for anyone to know.
-Melanie.
aka rotandroll
22 CF CFRD
As an adult I'm much more tight-lipped. My co-workers, employers and casual friends have no clue. Most of my boyfriend's friends don't know and his family has no clue. I cherish my privacy and think that unless a person is going to be an important part of my support structure, it's not something I want them to know. As much as CF is a huge part of my life, and it defines what I do on a daily basis, and in part has definitely made me who I am, I don't think it defines who I am... and that's why I don't think it's important for anyone to know.
-Melanie.
aka rotandroll
22 CF CFRD
Emily65Roses
New member
I hope you'll tell your boyfriend's family someday, if you guys end up married. <img src="i/expressions/heart.gif" border="0">
ClashPunk82
New member
Why wouldn't you want to tell your husband?
I have never hidden my CF. There are times that its not easy to get into the explanation of why I am coughing etc. Such as in line at the grocery store with a cart full of food. I try to educate people as much as I can. In high school every English project that required writing or research or documentation I used as the opportunity to educate my classmates. They all knew I was sick, but didnt really know what CF was all about. To this day I am open to anyone that questions things or just doesnt know. I have learned to handle the "rude" people better than I use to. That came with time & maturity. I realize (my sister reinforces this constantly) that CF is not who I am. Its just a part of me. However, its a big part of me & my life & my family. I also believe without the CF I wouldnt be the strong, independant person I am today. I would have the stubborness because my whole family is like that. Believe it or not I appreciate the fact that I have CF is some ways. It just has made me see things differently thru the years. It also makes me push myself so people dont have that "pity" for me. I have also come to learn the difference between pity & caring. Its not always easy to tell. Maybe all of this is easy for me because I have been fortunate to have a fabulous family (3 sisters that are always there & 3 brothers who come if I call) as well as good guys in my life. I have had jerks also, but ended up with the best out of them all! All this support makes a difference for me. Although inside......I support myself!